The topic of this article has nearly changed twice. First, I was meant to discuss New Year’s resolutions this month. I had it all written up, only requiring a few final tweaks. I would talk about why I like the concept but not the common execution. Go through how I tackle my own goals as a disabled person and hope it could help someone else make stable change in their life.
Then, a storm rolled into town and all my progress started coming undone. I could perhaps post it anyway, ignoring the fact that I couldn’t sustain change in the wake of a flare up, but that doesn’t feel right to me. Instead, I decided to discuss the effect cold weather has on chronic pain and trying to get through it.
And yet, after writing all this up, I managed to leave my house. Doing so, of course, made my flare-up even worse, but it’s good for my mental health. It’s a very fine line to walk, trying to balance those two things, and I rarely do so effectively, but I try. I somehow got it in my head that having left the house cancels out all the difficulty I’ve been having, and was tempted to scrap it all and pull something out of the drafts.
Well, that’s really silly. Everything I’ve written is still true. So, without further ado, allow me to regale you with the story of winter flare-ups.
The trouble is, it’s very difficult to describe how it feels. I’ve never been good at conveying the feeling of my pain itself, only the effect it has. I’m going to try anyway, so please bear with me.
My usual pain is primarily knees, back and head. I have near constant ear pain but, as it’s from an unrelated cause, it doesn’t much matter here. My wrist, hip, shoulder, neck and ankle pain comes and goes. I’d say my wrists and neck are the most frequent of them, with ankle being the rarest.
When it gets very cold, though? My entire body lights up like a Christmas tree. No part of my body is exempt. The pain is so intense and widespread that it leaves me mostly bed-bound. I’m exhausted and nauseous all the time, struggling to think about anything other than the feeling of my bones trying to escape my body. My bones snap, crack and pop every time I move. When I stand, my body sounds like a bowl of rice krispies. It doesn’t really hurt, per se, but it feels concerning.
I’m super sensitive to the heat so winter is usually a nice break for me but after a certain point, it becomes nearly as miserable as the height of summer. In summer, at least, I can get a break inside. I can’t exactly get a break from my body. Sleep, I guess, but I can only do that so long.
One of my goals this year was to be more consistent with taking care of myself. I tend to go through periods of taking very good care of myself and having no energy for anything else or vice versa, spending my energy on things I enjoy and losing sight of my body. I’d been doing pretty well with it until the temperatures started dropping into single digits, and even negatives.
So, what am I doing now? Well, I’m simplifying down to the most important things. After your adult teeth come in, you don’t exactly get another set so I’ve been prioritizing brushing my teeth. I’ve let go of washing my face for now, even though I hate it. I’d been managing to shower once or twice a week before this, which is a record for me since becoming ill, and it’s made me feel great. Both being clean but also just that showers sort of reset my brain. I usually shower with cool or cold water and it kind of just numbs my sensory issues for a little while. It’s hard on my energy and pain, but I find the trade off worth it.
Unfortunately, showering is a major energy suck. I’m hardly managing to get out of bed to eat, so I had to let it be. It makes me feel gross and uncomfortable, but it’s so hard to manage. I finally was able to shower yesterday, for the first time since the storm came in, but I’m still exhausted from it. It did finally make me realize I could wash my hair with my head tilted forward, which greatly reduces how much I have to move on my shower chair and how much strain my neck and shoulders get, so that’s one upside. When I can’t shower, I wash up as often as I can, which I do between showers anyway, but it’s really not the same. Especially with my hair. It’s long enough that simply brushing it thoroughly can delay how quickly it starts to feel oily and uncomfortable, but not so much that I don’t get fed up with unwashed hair after a week or so.
I’ve also been trying to stretch every day. I’d been doing well and feeling pretty good, but, obviously, it’s a lot harder now. I’ve been trying to keep up with stretching as much as I can, at least in bed if I can’t trust my legs to hold me up. It’s much harder than you’d expect, but I’m really trying to manage it.
The more frivolous goal of mine was to have regular piano practice, instead of just sporadically practicing when I felt like it. That sort of fell by the wayside already, because I had an infection at the start of the year, but I had been getting there when the storm came. I’ve almost entirely had to abandon it now. I try to just sit down and play a scale or two when I have some spare energy, but it’s hard to justify to myself.
My final goal was to start studying for my GED. I hadn’t begun yet, having just gotten my study book, but I feel awful leaving it behind now. The most I’ve been able to do is about an hour of reading through it. I had to wait over two years to get to a point where I can even take the GED, for a ridiculous reason that I will get very annoyed recounting, so it’s extra frustrating that I can’t make good on my plans for even longer.
One of the hardest parts of it all is how flare-ups affect my appetite. Most of the time I either have no appetite, or I’m very nauseous. The nausea is easier to manage, as I have medication which usually helps, but losing my appetite entirely is the worst. Eating feels like this distant alien phenomenon and I have to wrack my brain for something I can manage to choke down. It’s incredibly frustrating to lose control over something as simple as the food you eat at a time when most everything else is out of your reach.
This isn’t what I wanted for my first article so I hope it all makes sense. If you’re ill as well, just remember you’re not alone. Even if no one around you understands, there are people out there who do. If you’re lucky enough to find what I’ve described a horror story rather than familiar experience, I hope that this inspires you to have more compassion for the ill people in your life.
Thank you for reading and I’ll see you next time. Stay warm out there and take care of yourself.